What I Learn

Often parents like me focus on what we can teach our special needs children, but I'm often reminded that I have learned far more from Teale than I have taught. She's taught me to appreciate the little things. She's taught me that a cup of coffee & the silence of the morning is priceless. That hearing the birds sing, shouldn't be taken for granted. She's taught me that friends are not as easy to come by as I once believed and that I should cherish mine with all my  heart. Teale has taught me that when there is a will, there is truly a way. She has taught me letting go & never giving up. Teale has taught me to be thankful for what I have & to be faithful to others. She has taught me to never forget the people I love who have moved on or died. Teale has taught me to believe in the unseen & to trust what my inner voice says. Teale has brought me closer to God & she has taught me love that is unconditional. Teale has taught me hope, faith & love, like no one else.

Grateful & Blessed

I am often reminded how Blessed I am to have Mark as my partner. As we approach the 14th Anniversary of my Mom’s passing, I am reminded of one of those times, he knew what I needed, more than I did. On 4/22/06 we had been to the hospice my Mom was at in the morning with all three kids. My siblings had gathered there to discuss her obituary & funeral service. We knew she was at the end, but we didn’t know how close she actually was. The hospice nurses know the signs when a person is close to passing, so we were counting on them to let us know. After seeing my Mom & having the meeting, Mark & I decided to take the kids swimming at the Y. When we got out of the pool, we discovered several messages that Mom was getting closer to passing & the nurses thought there were only hours left. Mark had recently decided to rejoin a Wedding/Gala Band he had taken a break from because the girls were too tough for me to handle alone. Teale had become quite unpredictable & explosive, so we knew it was a time in our life we both needed to concentrate on our family. As we came out the other side of that stage, we had decided Mark could rejoin the band. The money was decent & Mark needs that musical release. Unfortunately, the very first gig he had agreed to do, was that night. Our neighbors agreed to help with the kids, so I could be at my Mom’s side. Mark, in my opinion, needed to go to the gig. It was way too late to find a sub & it could be several hours before my Mom passed. He could come after the gig. Plus, if you know me well, I was sure I could do this alone. Well, Mark would call the band leader behind my back & tell them he was sorry, but he was going to be with me. I have thought about this, more times than not. Mark was with me as my Mom took her last breath at approximately 10pm. If he had gone to the gig, he would have been in the middle of it. His being with me, was exactly what both of us needed. I can’t imagine not having him at that very difficult & poignant moment of my life. I can’t imagine trying to describe the honor it was to be there next to my Mom. I was so proud to be with him as he said goodbye, he leaned over and asked my Mom to say hello to his Dad for him. Maybe I needed Mark or maybe he needed me? Either way, it was & will always remain one of the most precious moments of my life, when we stood, hand in hand, as my Mom’s soul departed...

Just because...

I often wonder what makes our love special. My answers are always too many to count. If I had to sum it all up though, it’s the little things. It’s the way we are toward each other, the respect of each other. Love comes through respect. The deep, unconditional love is so different from the love of our youth. We let more go, we are not quick to “jump” on each other’s faults and quirks. I know Mark is better at this than I am, but I’ve learned from his example. I work hard at this, quelling the critical voices in my head and trying to remember, always, how forgiving he is. He has loved me through it all. He treats me with a deep respect no other person ever has. He believes in me & he supports me though all that life throws at us. The little things, are the big things, is the lesson I have finally truly learned. Mark still treats me like a woman he is dating, that makes our love special. I’m not his wife of 30 years, I’m his girlfriend, he’s still trying to impress. This is probably the key to the happy relationship we live together. We call each other or text, everyday, just because. Mark still opens doors, he still gets me safely in the car in inclement weather. He blocks me, as we cross the street, like I may walk in front of a car & I can’t cross a street by myself. It’s still funny to me, but sweet and it’s his way of protecting me & showing love. Mark is kind and his humanity of all radiates. I can’t begin to tell you how many times we have been out together & been approached by a person who may be an outcast or have mental illness or developmental disabilities. He has such deep respect for all, people feel that & talk to us. They may just need a listening ear, a person to show care. Mark is as good a human as I have ever known. I’m incredibly proud to be his partner. He makes me want to be better, every single day... 

21 Lessons

21 lessons I’ve learned from Teale, in honor of her 21st Birthday tomorrow;
1- Patience, I think I was patient before having her, but not like I am now.
2-This too will pass. Most behaviors, tough times, medical issues get solved or at least become more stable.
3- Her community of people contains some of the most wonderful humans in the world. I was not connected to the special needs community, before Teale, as I am now. I can’t imagine life without the people she brought me.
4- Brain damage does not mean the same to me. I now understand the brain has the ability to overcome & heal much. It is miraculous how giving Teale all the experiences we could, may or may not have changed her outcome. I often debate if she would have done as well in another family. My answer is no, I believe our family (including the extended family & all the people who touch her life) was who she needed.
5- Letting go, I’ve let go of much over the years. Sometimes it’s easy, sometimes I ache. There is too much to name, but those who knew me before Teale, know many of the losses.
6- Work does not always mean having a paying job. I’ve been a caretaker much of the 21 years, jobs have come and gone, but Teale’s care has always remained a constant. It is the one job I could never put a salary to.
7- I have allowed people to help me. In the beginning I often said I was fine or I tried to do it all on my own. Now I graciously accept help and then pay it forward, when I’m in a better place.
8- Kindness gets you more. When I’ve been in situations which are unfair or challenge me, staying calm & forgiving helps me to get what we need.
9- The squeaky wheel phrase really does work. I have needed to advocate for help and or change, multiple times, before it happens. People are flawed, they forget, they don’t call you back, they don’t follow through. Forgiveness & moving forward is more productive than being angry and sitting in disappointment.
10- Having a good partnership with Teale’s team is worth the effort. When people feel valued and appreciated, they take better care of my daughter.
11-Many of the things I thought were important at the beginning of this journey, are not. I no longer stress all the things I thought Teale would overcome. Letting go of losses gives me more peace.
13- Mental stability is one of the most difficult things to help a person achieve. I think I used to believe mental illness was solved easily by taking medications & working on your attitude. Mental illness is far more complicated than I knew. I am lucky the things I have lived and struggle in, have not destroyed me and caused debilitating mental health challenges.
14- Medicine trials are TOUGH! Each person reacts differently & getting the balance right is almost impossible in a person that can not verbalize the abstract feelings inside them.
15- Coloring in the lines is a ridiculous expectation and activity. I no longer care much about academics for Teale.  She needs hands on, life experiences. Who cares if she can color inside the lines or complete a worksheet?
16- People are good. There are those who judge but the majority of people love and care. The amount of support is far greater than the amount of judgement.
17- The more I share, the more people understand & learn. I have been an open book since the beginning and the number of people who reach out to me is incomprehensible. Many appreciate that they are not alone & others appreciate the insight into a life they don’t experience.
18- It’s easy to judge a situation from the outside. Others not knowing the whole story, is something we live. So when something happens, that I don’t understand, I try to remember I don’t know all of the history or sides to a situation. Judgement is unproductive. Compassion & understanding brings us together as a caring community.
19- Trauma is impactful on our lives. It is only recently coming to light how trauma hurts and changes a spirit. My family has faced much over the 21 years, as both individuals & as a group, we often try to use humor to get through it. But the truth is, we suffer from the experiences we have lived & the triggers are real. We can’t just squash those feelings or they come out in other ways. I personally need to write, talk & share, to work through my traumas. Otherwise I hurt too much.
20- Sharing our journey has connected us in ways I never could have imagined. I am “real” with much of our life. That being said, I do not share all the pain & joy we live. When Teale was younger, a friend said ~ People only see a snippet of your life & think they understand. What they don’t get is all the depth of the joys & the pain.
21- LOVE is the greatest lesson I have learned. To stay connected to my faith, to my God and to my husband has brought me through more than I could have ever imagined.

Without Family...

Teale & I were sitting at a light yesterday & an older man crossed the road in front of us. His shoes were much too big, his clothes didn't fit well, he looked like he had lived a hard life as he shuffled across the street. I could instantly tell this man had some special needs & my mind raced to that dark place, what would Teale do without family to care for her? Where would she be?
Then Teale, with much compassion & concern said ~ "What happened to him? Where he going?"
I responded with what I thought she needed to hear, but knew in my heart, might be a lie ~ "He's ok, he's going home to his family."
She needed me to say this a few times before she was satisfied & tears filled my eyes, as I lied to her, wondering if that man had a family.
I love Teale's compassion, it's so raw & unfiltered, wouldn't the world be a beautiful place if we all cared like my daughter does & acted on that care...

This is an older Facebook post, that I thought was worth sharing & elaborating on.

Our fears of Teale being alone in the world are many. We know Beau, our son, loves her. We hope he will be sure she’s safe and taken care of when we are gone. Our daughter, Gwenn, has said Teale is Beau’s job. She and Teale have a very strained relationship. Years of Teale treating Gwenn badly has beaten down whatever relationship they had. As little girls, they were very sweet at times, Gwenn understood from a very young age, she was the protector. Gwenn cared about Teale and tried to be her friend. Sometimes their love and silliness was my biggest joy. But, Teale’s mood disorder caused her to snap often and fear would take over. Her rages were dangerous and scary, Gwenn needed protection from the very beginning of her life. Bringing Gwenn home to Teale and all the explosive behavior Teale had just started displaying, was a frightening experience. Their relationship has been a roller coaster and even as Teale has gotten easier, Gwenn has dug in her heels and won’t even try. My heart hurts for the little girl who loved her sister. I remember all the times this went awry when Gwenn was small and wanted to play with Teale. I still hope for a change in how they interact but until Gwenn decides she wants the relationship, it will never be. So, that leaves Beau. Beau says he will take care of Teale. He jokes about them hanging together and I pray his life keeps him close so he always knows Teale. I’m sure I’ve written about the fear of “when we are gone,” several times. It is the one fear I play over and over again. I once heard our community is the only one that thinks the child passing before us might be more peaceful. It’s a horrific thing to admit, but it goes through my head... I just would hope to not be long here without her, if that were to happen, because no parent should bury their child...  

A Lost Year

I haven't blogged in forever. I need to blog to stay mentally healthy. It helps me to release and it is part of me. I am inherently a creative soul, be it in words or in another way. When I squelch my need to create, I feel "off." The want to write hasn't been gone all this time, it just wasn't the time or I didn't take the time. Time rules us. We don't always do certain things that we have the desires to do, because something else, more pressing wins our energies.
I have been working at my first “desk job” ever, the last year. The job has taken a lot of getting used to. I have never had a job that wasn’t “just” hands on. For this job I have paperwork and notes to write. I think it’s sort of taken the joy out of writing. It’s as if the spark of God that made me want to blog is gone, but I’m going to try to be more aware of this. I’m going to try to push through and see if the feeling of God in me, can be rejuvenated. It’s that feeling of Him writing through me, that makes writing so very easy for me. When I write, I feel the words pour out of me like an out of body experience. I believe I have used my personal Facebook page as a release. If I do nothing about sharing my thoughts “on paper,” I can not move on easily. So here goes it, welcome back to our lives... 

In the Beauty of the Morning

I woke this morning to the distinct feeling of being stared at. Mark had played another late gig, we didn’t get to bed until after 1AM. Usually, I would notice the shade up before going to bed. But I was exhausted and didn’t shut it before falling asleep. The window on my side, gets morning sun and with it open, our room was bright. I looked over and, not to my surprise, Teale was standing over me. Her hair was swooped to one side, the sun seemed to illuminate her. I couldn’t help but notice how beautiful she was. In those moments of not quite consciousness, I was overwhelmed by how she looked. I checked the time and it was only just 6AM, but it was obvious she wasn’t going to give up easily. I decided getting up was probably the lesser of the evils. I could have coffee and enjoy the morning quiet on my porch. Teale then, might, leave her Dad be. He had played out much in the last week and maybe, he would get some much deserved sleep.
Later in the morning, when Mark was up, I told him how I had woken and how incredibly gorgeous Teale had looked in the sunlight. I had struggled in those moments with the fantasy of her “normal” life and what that could have been. Mark understood, saying he had recently had a similar moment, looking over at her in his car one day. He was taken aback by her beauty and the thoughts of what “could have been,” crept in. I tried to not tear up, but my sadness is real and I only could voice, “ You have done well by her.” In the quiet of the kitchen, we hugged in silence. We understood something not anyone else can. As much as we love Teale as she is, it is forever a painful realization, that it could have been different for Teale. Teale could have been a college kid right now, a young adult, slowly separating from us. Instead, this morning, she woke me, because her greatest joy, is to be with people she loves. I am proudly one of those people.
We grieve sometimes, not because we are regretful of who Teale is, but because we have empathy. It isn’t  easy, her life, but it is filled by love. So for that, I am thankful.